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Delivering on the Promise: Preliminary Report

Transmittal Memo [DOC = 28K]; Cover: PDF = 203K
Table of Contents [Complete Report: HTML = 154K, DOC = 535K]
Federal Actions: Intro | Overview | Highlights | Health Care | Housing | Assistance | Personal Support | Transportation
Employment | Education | Technology Access | Compliance | Outreach | Income Supports | Data Use | Coordination
Executive Order 13217: Alternatives | The Initiative | Roots | Public Input | Conclusion
Appendices: Summary of Initiatives | Input Entities | Federal Register Notice

Executive Order 13217 -- The Legal and Factual Backdrop

The ADA serves as a "comprehensive national mandate for the elimination of discrimination against individuals with disabilities." 42 U.S.C. 12101(b)(1). Based on extensive fact-finding and study by Congress -- some 14 congressional hearings and 63 field hearings by a special congressional task force were held in the three years prior to passage of the ADA -- Congress found in the ADA that:

• Historically, society has tended to isolate and segregate individuals with disabilities, and despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem;

• Discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting and access to public services;

• Individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs or other opportunities;

• Census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally; [and]

• Individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society;

• 42 U.S.C. 12101(a). Based on these findings, Congress "invoke[d] the sweep of congressional authority" to address the major areas of discrimination faced day-to-day by people with disabilities. Accordingly, the ADA targets three major areas of discrimination against persons with disabilities. Title I addresses discrimination by employers; Title II addresses discrimination by governmental entities; and Title III addresses discrimination in public accommodations (e.g., stores, restaurants, etc.) operated by private entities.

Since its enactment, the ADA has opened doors and created opportunities for millions of children and adults with disabilities to participate fully in the rich fabric of their own communities. This year, with the unveiling of the New Freedom Initiative, President George W. Bush reminded us that despite significant progress, enormous challenges remain. The New Freedom Initiative calls upon all Americans to rededicate themselves to promoting the full inclusion of people with disabilities in American society and to fulfilling the promises of the ADA.

The Integration Regulation and Olmstead v. L.C.

In the ADA, Congress required the Attorney General to promulgate regulations to implement the statute. One of those regulations, the integration regulation, provides that: "[a] public entity shall administer services, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." 28 C.F.R. 35.130(b) (1996). In the preamble to the regulations, the Attorney General explained that "the most integrated setting" is "a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible." 28 C.F.R. Pt. 35 App. A. 35.130, at 469. It is the integration regulation which was at issue in Olmstead v. L.C., the landmark decision affirming the rights of individuals with disabilities to live and receive treatment in community settings whenever appropriate.

Olmstead v. L.C., 527 U.S. 581 (1999), was brought by two Georgia women whose disabilities include mental retardation and mental illness. At the time the suit was filed, both plaintiffs lived in state-run institutions, although their treatment professionals had determined that they could be appropriately served in a community setting. The plaintiffs asserted that continued institutionalization was a violation of their right under the ADA to live in the most integrated setting appropriate. The Supreme Court agreed, holding that "[u]njustified isolation . . . is properly regarded as discrimination based on disability."

The Court's findings regarding the harms of institutionalization are unequivocal:

[I]nstitutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.

Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.

Olmstead, 527 U.S. at 600-01.

Based on these factual findings, the Court held that unnecessary segregation of people with disabilities in institutions is a form of discrimination under the ADA, and that individuals with disabilities have a civil right to receive services in the community in certain circumstances.

Under the Court's decision, states are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when: (a) treatment professionals reasonably determine that such placement is appropriate; (b) the affected persons do not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others who are receiving state-supported disability services. The Court cautioned however, that nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings. Moreover, the state's responsibility, once it provides community-based treatment to qualified persons with disabilities, is not unlimited. Under ADA regulations, states are obliged to "make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity." 28 C.F.R. 35.130(b)(7).

The Supreme Court opinions in Olmstead suggest that evaluation of whether a modification entails "fundamental alteration" of a program takes into account three factors: the cost of providing services to the individual in the most integrated setting appropriate; the resources available to the state; and how the provision of services affects the ability of the state to meet the needs of others with disabilities. Significantly, a plurality of the Court suggests that a state could establish compliance with the ADA's reasonable modification requirement if it shows that it has:

• a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings, and
• a waiting list that moves at a reasonable pace not controlled by the state's endeavors to keep its institutions fully populated.

Olmstead, 527 U.S. at 605-06.

The States' Response to Olmstead

Historically, state and local governments have taken the lead to develop innovative programs to serve people with disabilities in their own homes and communities. Funding for these programs comes from a variety of sources including federal block grants, competitive grants, state and local revenues and the Medicaid and Medicare programs. However, as is reflected in the many comments received from state and local government authorities, efforts by states to develop and operate community-based programs for individuals with disabilities have been hampered by a variety of factors that range from inadequate funding to lack of flexibility in federal rules that govern the Medicaid program -- a key source of funding for home and community-based care. As a result, community-based care remains a patchwork and is often inadequate to ensure against inappropriate institutionalization. Today, while there are a number of states operating model programs, and even some that have closed all state institutions, individuals with disabilities still face enormous variability in the availability, accessibility and quality of community-based care.

For states, the Olmstead decision has spurred renewed activity to address these systemic barriers and to increase and improve access. At a recent hearing before the Senate Aging Committee, one state official characterized Olmstead as a catalyst for change:

The 1999 U.S. Supreme Court decision, Olmstead v. L.C., had a dual effect on the state of Louisiana. First, it became the legal basis for Louisiana's version of Olmstead, the Barthelemy v. Department of Health and Hospitals lawsuit. Second, it was [the] central force that led to a partnership between the aging and disability communities in the state of Louisiana.

Testimony of Laura Brackin, M.A., Executive Director, Governor's Office of Disability Affairs, state of Louisiana, Before the Special Committee on Aging, U.S. Senate. September 24, 2001.

The Barthelemy case referenced by Ms. Brackin demonstrates how Olmstead caused a sea-change in a state's long-term care system. Among other things, the recent settlement reached by the parties in the Barthelemy lawsuit calls for significant and unprecedented expansions in three home and community-based waiver programs serving the elderly and people with disabilities in Louisiana. Louisiana has also committed to expanding personal care services in its Medicaid program. In the wake of the Olmstead decision, a state-wide, cross disability coalition has formed. This coalition has worked collaboratively with the legislature and the Governor to enact legislation that calls for further planning to reform long-term care in the state.

According to the National Conference of State Legislatures (NCSL), which is tracking state responses to Olmstead, the majority of states, like Louisiana, are responding affirmatively to Olmstead. Most are engaged in service planning and are moving toward implementation of system reforms and service expansions. The GAO reported "[a]s of September 2001, an estimated 40 states and the District of Columbia had task forces or commissions that were addressing Olmstead issues."³ Approximately 14 states have completed draft or initial plans. According to NCSL, the goal for most states is to complete initial plans by the end of this year or early 2002.⁴ Significantly, many of these states are working closely with consumers, family members and other stakeholders to formulate and draft their plans for system reform.

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³ GAO Testimony at 19.
⁴ Id.

Last revised: April 9, 2002